Many questions……

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Hello everyone, thank you for all of your kind words so far. I’ve never been on extremely high doses, only prescription, no other drugs or alcohol, etc. I say this, so that you might be able to help me piece this mess together. Though I know there is no such thing as piecing this together from what I can see. I’m really shaky today. I thought I was getting better from that large 26.6% cut at that detox. And I believe I probably was but now I fired a prescriber hired another one, and I have a consultant with someone on the BIC coming up soon also to help us decide which way to go. I’m 67 and 12 years out from colorectal cancer. My history is at least 40 years low-dose most recent was Valium, but I’m sure over the years in past there was Ativan and Xanax thrown in just for color coordination or color of the week. But for the last years, it’s been Valium and I’m grateful for that. I had a psychiatrist who did that for me and he retired sadly and I have been left with no one for quite a few years until just recently when I realized I’ve been in tolerance for more than a few years, and couldn’t figure out why I was so sick. I have a few questions. I know there’s a lot of knowledge on this board and I respect that. But I also ask that you respect that I am incredibly fragile right now and ready to fall off the ledge and so if it’s bad news, let’s just not post it on my post for the day because I’m already having a hard time making it through this morning. Thank you If I was in tolerance and I suffered a lot of those things I read about anhedonia, I haven’t slept for 12 years, night sweats at 4 AM agoraphobic attacks out of nowhere racing thoughts thoughts serious, depression, etc. etc. all the while running into the ER’s which we know are the wrong place now for Help only to be told each time I was wrong and it was a sinus arrhythmia or a PVC. I knew better I know this  cancer damaged body better than they do. I got a good nights sleep the other night and I got really excited. Big mistake right? It doesn’t really mean a lot in the big picture does?it because this is not linear. Last night I kept jumping out of my sleep out of panic attacks, which is very unusual for me. I have nightmares, but I don’t usually jump out of my sleep from panic except when I got the cancer diagnosis but that was 12 years ago. I have got to start this taper and I hired someone the other day to be a prescriber. And they are willing to work with me after we talk to the consultant from the BIC. Based on my health history, etc. I guess she’s going to give her opinion in another state. Of which method she thinks will be best and then leave it to us to figure it out in our state. I am absolutely terrified. Beyond terrified, and I am a cancer survivor and when I tell you, I’m terrified you have to know how afraid I really am. I am alone. I have no support system near me. No family at all. I had to put my boundaries up for my own safety. I have my service dog that I love dearly and I have even worried that I might harm her or some thing because some of these posts about rage and depersonalization, and all that really scare me. And I cannot and will not hurt her and I’m terrified that when she just misbehaves as dogs will do and won’t mind that short temper thing will flareup, and I never ever ever wanna hurt her. Is there any one out here who had an easy ride of it off Valium long term low-dose you please chime in give me some good news. I also have PTSD we have to throw that into the mix. Lots of lots of death and destruction. I thought that that is done and over with but the body keeps score. Could there be any truth to my hope that maybe if I’ve suffered some of the symptoms and tolerance I won’t have to suffer them again or is that just me wishful thinking? And I’m terrified when I read about the people that can’t make that last cut. They just can’t do it when they can’t get under 5 mg? It scares me really bad I have been able to make a distinction here, but I think it’s truth and the fact that all of the other benzos, except Valium seem to give a roougher and a longer ride for the most part, except for those few great stories of people who did ct and weeks later or feeling fine. Wonderful stories, but we know that’s not the norm. I’m worried I won’t make this alone. My body’s been through too much and I’m scared. Night times are the absolute worst for me. My mind goes a mile a minute and I am terrified and sometimes wonder if this is going to kill me or if something weird might happen, and I might try to do some thing to myself without being aware, if things got really bad. I know those things don’t typically happen to a low-dose long Valium user but nonetheless my body is whacked out from cancer treatment and we have to factor that in. I don’t know anyone to offer a place to live or I would invite someone I knew if I could and trust them a place to live while I go through this. But that’s not an option. I can’t check myself in somewhere. I don’t have the money for the insurance. I don’t have any family that is safe to be around. Period this terror I have is there anyone that can talk me off the ledge this morning. I’m tired of hanging off the ledge. God bless all of you. And I know I said it once and I’m going to say it again please don’t say anything that might scare me, I’m already too scared today. Thank you. Also, it seems Teva is the only brand I can get around here and Teva makes me sick. With that said, would it make sense for me to do the oral solution? My brain cells are gone and I would like to do it, the simplest way, but I will do whatever I have to do and if the oral solution is a different brand and Teva. Then I could do that because I can’t get stuck with Teva. my body rejects it really bad. Teva was when I first recognized I was going into tolerance and then would walk over to the medicine chest pull out the bottle and look at it and recognize it was Teva and shake my head and say how did this get by me another time? Yes, it’s always complicated isn’t it?. I fear this will be the end of me and I’m worried about my dog. Plus, I mentioned a micro taper to my prescriber the other day, and she just thought the cut and hold method but we’re going to wait for that consultation. Can a cut and hold the done with the oral suspension also? So many questions you’re all very kind. Thank you. God bless you

Edited April 27 by [...]
Spellcheck fix

[[PE...]]

Hi.

Your posts are very long. If you can short them down or split them to many mabey more would answer 

[[PE...]]

To answer one of your questions, I was on diazepam/valium and got better. Last Dose 7 month's ago.

 

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19 minutes ago, [[P...] said:

Hi.

Your posts are very long. If you can short them down or split them to many mabey more would answer 

I know they’re long @[PE...] it’s a side effect of chemo brain and always has been. Sorry if it’s offensive.. I guess those that would like to help me will answer and those that won’t I know I ask for a lot. This is really new to me. I thought cancer was the biggest war I would ever have to face. I never thought these little pills would try to do me in.

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19 minutes ago, [[P...] said:

To answer one of your questions, I was on diazepam/valium and got better. Last Dose 7 month's ago.

Seven months ago I know to you was a long time but to a lot of us it doesn’t seem long when you read some of these other stories does it? Maybe I’ll learn how to use this site a little better and find out what you did and how you did it thank you for your answer. God bless you.

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If you want to share a little bit more, I’m open to hearing. About what you did called turkey or tapir, and what you suffered with or what maybe you avoided. And what things worked for you and what didn’t. It seems to me. Valium is a whole Nother monster, but not as bad as the other ones when I read the stories and put them all together in my head. That long half life must be key. How many years have you taken them?

[[PE...]]

[[PE...]]

I haven't noticed being sensitive to anything that put me back in accute. I drink coffee,  lots in the morning but nothing during the day. I go to the gym, I'm there right now actually

moving my body helps me heal i think. 

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Thank you for sharing @[PE...] you sound very strong. I can’t imagine 150 mg. It’s a scary thought. I’m glad you’re doing better. I can’t imagine drinking coffee again but maybe some day. Thank you for sharing.

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I don’t know if I want the answer to this question or not. If your intolerance does that mean, the taper will not work? I am actually afraid of the answer to this. But I am asking you and from what I read in your post I got that impression. Again, thank you for sharing.

[[Bo...]]

Hi hope others will chime in. I’m so sorry for such a long journey. Many on here have had the same and have made it so don’t let that fear start getting to you bc it can def add a whole other layer to this. Easier said than done and I’m battling severe fear so I have to tell myself this.

might copy and paste  in the taper threads and @[Li...] is  a wonderful help as are the other moderators.

this book can help greatly too as it just came out and the first to be developed. Dr Mark Horowitz who is going thru this himself wrote it given the severe issues he’s had coming off the meds. Great valuable resource for prescribers that hopefully will be the norm used to help people taper correctly doing forward. 
https://www.amazon.com/Maudsley-Guidelines-prescribing-Prescribing/dp/111982298X

yiu likely reached tolerance on the Valium what it sounds like to me but moderators can explain better. Sending lots of hugs and continue to reach out and also the benzo warrior Facebook group is helpful in supporting others if you need an ear. 
Angie peacock is a great benzo coach and has tapering support circles that are very affordable $25 that might be something helpful during your taper 

https://calendly.com/apeacockconsulting

 

 

[[PE...]]

[[je...]]

[[je...]]

I can see you are very scared and frightened but not every taper is a horror story. I did not taper from Valium but I tapered from a very high dose Clonazepam which is much more potent than Valium. My taper was okay. I was functional throughout and able to work, take care of myself and my family. 

What you need to remember is that the stories you read on here is not representative of all Benzo users. It is skewed towards those who struggle and suffer. People who have an easier time getting off lower doses will not seek out a support forum. There’s no need for that. 

Many years ago I tapered off an anti depressant. I barely had any problems. I never searched for a forum or support, yet there is a whole site dedicated to people who suffer from AD withdrawal. But you won’t find my story there because I had no symptoms and no need for it. 

Please don’t work yourself up into what could possibly go wrong based on what you read here. Not every taper is a horror story. Mine wasn’t and I suspect that I had signs of tolerance withdrawal when I started my taper. You might be stressing about all these symptoms and possible scenarios that might never even happen.

If you take it extremely slow then you should theoretically be able to manage most of your symptoms. By slow, I mean 5% or less reductions every two weeks. Keep a diary where you track your symptoms daily, so you know if there’s a change and you need to make adjustments. The good thing is you know how to approach your taper. You know not to make big cuts. You have a community here where you can ask for input and support. You’ve survived cancer. You’ve got this!

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12 minutes ago, [[j...] said:

I can see you are very scared and frightened but not every taper is a horror story. I did not taper from Valium but I tapered from a very high dose Clonazepam which is much more potent than Valium. My taper was okay. I was functional throughout and able to work, take care of myself and my family. 

What you need to remember is that the stories you read on here is not representative of all Benzo users. It is skewed towards those who struggle and suffer. People who have an easier time getting off lower doses will not seek out a support forum. There’s no need for that. 

Many years ago I tapered off an anti depressant. I barely had any problems. I never searched for a forum or support, yet there is a whole site dedicated to people who suffer from AD withdrawal. But you won’t find my story there because I had no symptoms and no need for it. 

Please don’t work yourself up into what could possibly go wrong based on what you read here. Not every taper is a horror story. Mine wasn’t and I suspect that I had signs of tolerance withdrawal when I started my taper. You might be stressing about all these symptoms and possible scenarios that might never even happen.

If you take it extremely slow then you should theoretically be able to manage most of your symptoms. By slow, I mean 5% or less reductions every two weeks. Keep a diary where you track your symptoms daily, so you know if there’s a change and you need to make adjustments. The good thing is you know how to approach your taper. You know not to make big cuts. You have a community here where you can ask for input and support. You’ve survived cancer. You’ve got this!

Thank you for the time you spent replying. I feel like I’ve been in tolerance for very many years. You see when I fell off a ladder and broke a few bones and was in conscious the surgeons reduced my dose by 50% an a week later when I read my discharge papers, they did it because they were going to prescribe OxyContin for the broken bones but I throw those in the garbage so I wish they would’ve left the benzo alone. I never did raise it from that 50%. And I think I’ve been in a slow brewing simmering hell since then, I was kind of wondering if that was sort of like. the same as withdrawal symptoms and will they repeat their selves or have I already suffered them ????? and I’m worried about some thing I’ve been living for a few years. I can’t multitask. I can’t concentrate. I can barely barely drive. So I was just wondering if I’m gonna get a double whammy or if someone is intolerance that then tapers just extends the same madness or is it and I can’t find that answer anywhere. Maybe there is no real answer you know except the only thing I’m 100% positive sure of is that the devil himself made these drugs. And I’ll never change my mind about that. God bless us all. I apologize to everyone about my long post. The reason they’re so messed up. If I use a really old iPhone with voice text because I’m shaking so bad I can’t even use my keypad go back and try to clean them up and you know if you can’t That’s a whole new issue, right?

Edited April 27 by [...]

[[je...]]

[[je...]]

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13 minutes ago, [[j...] said:

No problem about your posts. I was trying to explain that it's not about people not wanting to you help you, just that people might struggle to read it. But I can understand voice text must be difficult to use. Well done for navigating the use of voice of text and please don't limit the length of your posts because you're not typing.

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8 minutes ago, [[j...] said:

I can tell you a bit about my situation and what I suspect was tolerance. I developed insomnia, anxiety and memory loss while I was on the drug. I never had this prior to using benzo's. While tapering my insomnia got a lot worse, but I don't think that was a "double whammy". I think everyone in withdrawal struggles to the same extend. My anxiety and memory loss also got worse but not as bad as my insomnia. I think these were also relatively "normal" and what I would've had anyway regardless if I had tolerance. 

Ultimately I don't think you're doing yourself any favours by stressing out how bad it's going to get. Stress and anxiety make our symptoms much worse. I know for a fact when I have life stressors that my symptoms ramp up. You don't want to create a situation where you are in fact increasing the intensity of these symptoms by stressing over tolerance withdrawal.

You know there’s just not a one size fits all for any of us and I agree with that. I’m just frustrated because I have looked and looked and looked for answers for years a few years and every ER that threw me out said it couldn’t be the drugs. It couldn’t be the drugs and I’m shredding papers right now and I’m shredding all the old ER reports saying that there was a benzo abuse, but that was not the problem. And it was very disheartening because there was never any abuse. And the database shows that and even proves that that that they have access to. In fact, I always had extras every month that I didn’t even take. I just had three full bottles enough to probably kill a field of horses and I got rid of them at the ER the last time I was at one. They’re sure all in a club and they don’t own any of it do they? they don’t take any responsibility and I knew what was wrong with me and they kept denying it.  I will be sure to cross the street and around the block the next time I have to see an emergency room door. The only time whenever they  helped me was when I fell off that darn ladder. They should have Realized it was an older woman on Benzos that fell off a ladder. It’s a known fact that benzos make us fall as we get older. How hard was it to have set  me a side after the surgery and said we need to talk to you about some thing very important right now. But nobody ever did. And all I was worried about was getting dementia from the pills in old age. Which wasn’t a really big concern because I felt like I’ve had dementia from these anyways it didn’t seem to be a big issue at the time though now it sure is.

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35 minutes ago, [[j...] said:

I can tell you a bit about my situation and what I suspect was tolerance. I developed insomnia, anxiety and memory loss while I was on the drug. I never had this prior to using benzo's. While tapering my insomnia got a lot worse, but I don't think that was a "double whammy". I think everyone in withdrawal struggles to the same extend. My anxiety and memory loss also got worse but not as bad as my insomnia. I think these were also relatively "normal" and what I would've had anyway regardless if I had tolerance. 

Ultimately I don't think you're doing yourself any favours by stressing out how bad it's going to get. Stress and anxiety make our symptoms much worse. I know for a fact when I have life stressors that my symptoms ramp up. You don't want to create a situation where you are in fact increasing the intensity of these symptoms by stressing over tolerance withdrawal.

Quote

 

Well, you know it’s really interesting because my life has been a living hell for a few years now every day getting worse and worse and me thinking that it was just me getting old but I just didn’t know how it could hit me like a truck full of cement the way it did. And I kept comparing it to stress and age. I never had a clue I was taking a non-therapeutic dose. . And I kept comparing it to stress and age. I never had a clue I was taking some thing I had grown intolerant too. So with that said, my life has been a living, hell dry eye, floaters no Sleep nightmares you name it. Nausea weight loss, palpitations, shortness of breath. With that said, I guess I’ve already had stuff and maybe if it comes on again I can at least say I’m an old pro at it right? And if it didn’t kill me the first time, it likely won’t the second time around. A lot of people mean well when they say you survived cancer and I am grateful and am thankful when they say that. But they just don’t realize the horrific toll it took to get this far and how you wonder if you have much fight left in you anymore, and that’s probably why my reactions seem so over the edge here and I just joined, and I don’t know much of anything. But I’m learning and I’m probably learning from the best. Thank you

Edited April 27 by [...]

[[PE...]]

Short answer. 

It's impossible to predict how you will react when you start to taper. There are just to many variables.

And worrying about it as buddy @[je...]says gives just a extra layer of mental pressure. 

Try to see it as a personal upgrade that will give you more life quality. Or like going up a steep hill with a jummy smorgasbord waiting when you reached the top.

you probably get the withdrawal symptoms you got when your doctors removed 50% of your dose back. But might not. It's just impossible to predict.

Edited April 27 by [PE...]

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10 minutes ago, [[P...] said:

Short answer. 

It's impossible to predict how you will react when you start to taper. There are just to many variables.

And worrying about it as buddy @[je...]says gives just a extra layer of mental pressure. 

Try to see it as a personal upgrade that will give you more life quality. Or like going up a steep hill with a jummy smorgasbord waiting when you reached the top.

you probably get the withdrawal symptoms you got when your doctors removed 50% of your dose back. But might not. It's just impossible to predict.

[[Bl...]]

We are the same age...67. I can only make suggestions based on my experience with these drugs....even if I sound dogmatic...these are just my thoughts!

1)  Foremost, stay focused and determined to stick to the decision to get off these drugs.

2)  Slow and steady wins the race...go at the pace that works for you!

3)  Learn about these drugs in order to know your "enemy".....best way I found was by studying those who are intimately familiar with this process.

4)  Many have been there/done that...study what worked for them and stay with this study program as long as you see fit. In my case, I have yet to tire of learning. 

5)  Always follow your gut feelings on important decisions regarding this journey...since, in the end, you're the one who has to live with those decisions. But, remember, doing our homework is critical prior to any important decision.

6)  Never give up hope...and again, remain focused on your ultimate goal at ALL times.